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1.2 Implications of guidance for primary care

1.2 Implications of guidance for primary care

Fundamental to the management of epilepsy is an agreed pathway by which primary and secondary care share responsibility and communicate effectively. Practices and Commissioning Groups have an essential role to play in co-ordinating the system of managed care.1-4


When a new diagnosis of epilepsy is suspected, a referral to an epilepsy specialist should be considered as soon as possible. The GP can provide key information to aid the diagnosis, as they are often the first to suspect epilepsy and are in the best position to obtain a first-hand witness account and provide a record of the diagnostic features.

GPs are well placed to provide newly diagnosed epilepsy patients with further information about stopping driving.

They can also encourage carers to use a mobile phone or other technology to video record any further suspected seizures as an aid to diagnosis by the specialist.

See section 2.1 for more information

See tool A.1

Post-diagnosis and long-term management

Anti-epileptic drug (AED) treatment should only be initiated on the advice of an epilepsy specialist. The NICE guidance states that the primary care team should regularly ensure that people with epilepsy, who require treatment with AEDs, are being optimally managed so that re-referral to the specialist services is only necessary in specific instances (outlined below).

The first step in this structured management of patient care (ultimately reviewing and reporting) is the development of a register of patients who have epilepsy who require treatment with AEDs.

See section 3.2 for more information

See tools A.5, A.16

Once identified, patients should undergo a structured annual review. The review will vary according to the individual, but the review should ensure that:

  • the patient's epilepsy is well controlled
  • there are no gaps in information provision in respect of the condition or the treatment
  • patients are screened for depression/anxiety, substance/ alcohol misuse, suicidal thoughts and risk assessment
  • any epilepsy-related non-elective hospital admissions over the past year are discussed to identify any contributing factors
  • there are no communication difficulties between primary and secondary care leading to confusion regarding AEDs
  • the patient is given an opportunity to discuss their concerns and beliefs about AEDs, whether there are side-effects, how regularly they take them and how AEDs are stored.

Discussions should cover contraception/pre-conception counselling where relevant. For patients who continue to have seizures, a discussion about referral to an epilepsy expert may be appropriate. Patients also should be made aware that seizure control may be improved with better management, and, for some, surgery.

See section 3 for more information

See tools A.6, A.7, A.8, A.9, A.10, A.11, A.12, A.13, A.14,

At annual review, or in general consultation, a need for re-referral to an epilepsy specialist, or where NICE guidance indicates, to a tertiary epilepsy specialist centre may become apparent. For example:

  • where a patient has not been seizure-free for two years despite trying different AEDs1
  • they experience unacceptable side-effects
  • there is diagnostic doubt
  • AED withdrawal may be appropriate
  • there is to be a change in dose and/or treatment outside of those agreed in the shared care treatment plan
  • if female and considering starting a family or are pregnant.

See section 3.5 for more information

See tool A.17

Keeping an up-to-date epilepsy register and a record of epilepsy related consultations will allow for detailed Quality Outcomes Framework (QOF) reports. Ultimately this will improve the quality of patient care.

See section 3.6for more information

See tool A.18


1 National Institute for Health and Clinical Excellence (NICE), 2012. The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care. [CG137]. London: NICE.

2 Royal College of General Practitioners/Department of Health, 2003. Guidelines for the appointment of general practitioners with special interests in the delivery of clinical services: Epilepsy. [online] (Accessed 03/04/2012).

3 Scottish Intercollegiate Guidelines Network (SIGN), 2003. Diagnosis and management of epilepsy in adults. A national clinical guideline. Edinburgh: SIGN.

4 Crawford P, 2005. Best practice guidelines for the management of women with epilepsy. Epilepsia. 46(Suppl. 9): 117–124.

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